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Sunday, June 12, 2022

Wednesday, May 23, 2018

The Other Huge Trauma In My Life - Antidepressant Withdrawal



I don't often write about the other "huge trauma," in my life...that of antidepressant withdrawal. Sometimes I don't know which is hardest, parenting children with trauma/brain challenges or trying to manage my own physical/mental issues that come as I attempt to taper off this brain altering medication.

I realized I needed to get off this medication when I found myself needing multiple other prescription medications to manage the side affects caused by Effexor. I talked to my doctor about it and he said, "No problem." At the time I was on 300 mg and he told me he will prescribe 150 and see how it goes. I didn't feel to bad with that drop, but when I dropped to 75 mg. I felt horrible. I remember telling Dean, "Don't leave me," because I didn't trust myself. I knew my brain was not functioning correctly and the thought's I was getting due to my intense physical pain scared me. I told my doctor how I felt and he brushed me off. He insisted that the lower the dose the less withdrawal I would have. I didn't trust him anymore and began doing my own research.

I found supplements that were helpful as antidepressants reduce your adrenal function. I also found a group who recommends a 10% drop every four weeks at the most. To achieve this, I bought a scales and weighed the teeny beads inside each capsule. Tapering tends to make your body super sensitive and eventually weighing the beads wasn't precise enough so I found a compounding pharmacy who was willing to make the exact dose I needed. I have been tapering for 2.5 years and at the rate I am going I will have several more ahead of me, so next week I am going to try a bigger taper - 10%. To say I am terrified is putting it mildly. The anxiety is nearly getting the best of me this week because I know what I have ahead of me.

People often ask what withdrawal is like. I find it difficult to explain but I will give it my best shot here.

- Brain zaps - It literally feels like bolts of electricity are flashing through your brain.
-Head ache's - They feel like a vice and cut your ability to think or reason. Some people sleep with ice packs to alleviate the brain pressure.
-Insomnia - Wide awake during the night with racing thoughts and severe fatigue during the day.
-All manner of gastrointestinal issue's. You name it, you will have it.
- The intense desire to crawl out of your skin. For me, this is one of the worst. Clothing hurts, combing my hair is painful, my skin itches, but I can't alleviate the itch.
- Chills - my hands and feet will turn white/purple and be icy cold. My inner core is freezing and even a hot shower does little to warm me. My family is used to seeing me wrapped in blankets, sweaters and drinking hot tea.
- Then there is the psychological aspect - depression, anxiety, suicidal thoughts (Yes, I know how to handle them and when to seek help) severe anger and irritability.
- Inability to carry on a conversation, extreme forgetfulness, inability to make decisions (my poor husband gets so many phone calls because I cannot make even the most basic of decisions). I have been known to walk away in the middle of a conversation because my brain suddenly "forgot" I was talking to someone.

There are times I am tempted to just quite taking my medication and suffer through the ensuing pain, but the stories of people who have done this and are living with these, and worse symptoms years down the road, hold me back. I still have at least 2 years ahead of me and sometimes I think I can't do it, listening to these stories puts that time frame into perspective. Last night Dean told me to look back on the 2.5 years I have come through and focus on them which is helpful, however I know the further you taper the more intense the withdrawal symptoms and that is not at all comforting!

The frustrating thing is, that the pharmaceutical companies tell doctors that this medication, and others like it, only cause minimal side affects in a select few patients, or that if the patient does have withdrawal that means he needs the medication. 

There is one bright spot though, every time I taper and come through the withdrawal, I can enjoy life a bit more. For so many years my senses were numbed by this medication. I didn't realize it, but now that I am slowly getting it out of my system, the sky is brighter, there is joy in life again....but by then it is time to taper a little more and I go through the whole cycle again. Another plus, I have already been able to successfully eliminate one of my prescription medications, so I will keep pressing onward!

Not all antidepressants cause such intense withdrawal when you try to discontinue them. Only SSRI's and SNRI's have this ability with SNRI's being the worst of the two, and I have the dubious privilege of being on an SNRI. I share this because I know how freely antidepressants are given out (I also acknowledge that there is a place for them) and if my story can spare anyone the pain and trauma me and my family have been enduring these past years, I will be grateful! 


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Monday, May 21, 2018

The Up And Down Mood Cycle Of FASD

Joseph typically has several weeks/months where we can successfully loosen up on boundaries, he doesn't melt down as easily, and rages are few and far between. Then something changes (we have yet to figure out what) and he regresses socially, emotionally, cognitively. We have to keep a close eye on him, always think outside the box because one never knows what he will do, and deal with copious amounts of tears. Nothing is right in his world and everything is everyone else's fault. We hear a lot of, "You just want to make my life hard!"

He just came through his longest good stretch ever. We were seriously beginning to think that maybe home school was the answer to his over stimulation and mood swings. I know, don't laugh. You could say we are hard learner's, but I choose to think we are being optimistic.

This afternoon after his quiet time, I noticed he wasn't moving his shoulders or turning his head. I soon saw why. He had both side's of his neck scratched raw. There were spots with the skin literally scratched off. We have been battling his eczema again. Nothing, not lotion, medication, diet or prescription creams make a difference. His dermatologist, after trying everything, finally agreed that it must be stress induced. What is he stressed about? I have no idea, other than he is on the down side of his mood swings and at those times the neuron's in his brain become tangled and then anything is possible.

I cleaned his neck and put cream on, which made him furious. After he calmed down I told him he may ride bike. He rides in a circle at the top of our drive so I can keep an eye on him. I heard his voice getting higher and more shrill and was beginning to call him in, when he and Lia had a near collision. I finished what I was saying and he exploded, "It wasn't my fault she almost wrecked, I told her to go that way and she came this way instead and now you blame me and make me stay inside while she doesn't have any consequences!!!!" I tried to explain that the near wreck had nothing to do with him having to come inside, but his brain wasn't processing anything I said. I told him to sit on the sofa and read a book, but he came after me demanding to know why he has to come inside when Lia doesn't, cause it was all her fault. I explained that I didn't tell him to come inside as a consequence for the near wreck four more times before my brain kicked in and reminded me that it is pointless to talk. When Big Brother, hearing the insults being thrown my way, offered to intervene, I told him to just let Joseph go, when he is yelling insults it is the best to just let him blow off steam.

Joseph stayed in the family room and yelled at me while I was mixing up meatballs in the kitchen. Everything I suggested was a bad idea, so I ignored him. Eventually he calmed down and decided to read his book, although the huffs and sighs coming from that side of the house told me plenty. I know he still believes that I am being mean to him. This is what is so hard about FASD, their skewed perception and inability to realize that what their way of thinking isn't correct. 

To add insult to injury, this meltdown most likely took a toll on his meager coping ability, so we will have to implement even firmer boundaries for the remainder of the day which will make him even more furious. When he is in this mood, anything and everything is wrong. Nothing is his fault, no one likes him, and he is sure everyone just wants him to have a bad life. Sometimes I shudder when I think of the coming years. He is still smaller than me, I am not afraid of his strength...but for how long?

I am curious, does anyone else find that their child has good weeks/months, then have stretches where they have a much more difficult time coping with life?

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Wednesday, May 9, 2018

Dear Struggling Parent You Are Not Alone - Living With FASD


Being the caregiver or parent of an individual with FASD can be isolating. It is easy to feel like you are alone in fighting for your child. You have both physical and mental health problems to maneuver around which are often compounded by trauma, be it from early childhood trauma, or simply from the complexities the individual with FASD faces while traversing the world.

One of the most common responses I get when I post about FASD is, "I am so glad I am not the only one! I felt so alone, just knowing someone else can empathize means so much."

I have often tried to figure out why we feel so alone and I think it has to do with several things such as:

- People with FASD typically do not initially present as having a disability. FASD is often referred to as a hidden disability, which means those with the diagnosis are often misunderstood and/or expected to carry on with life in the same manner as the general public. When they fail to do so they are labeled as stubborn, lazy, defiant etc.... and you feel alone because you know your child isn't "bad," and you wish the public could see how very hard he is trying, how hard you are trying.

- Due to having both physical and mental health issue's, those with FASD often need various levels of professional care. When these professionals fail to communicate accurately the individual can quickly fall through the cracks. The parent or caregiver, in addition to helping them navigate though each day, also has to be a full time secretary who is strong enough to stand up against these providers when things aren't going as they should.... and you feel so alone. It would be such a blessing if you didn't have to be responsible for making sure your child's caregiver's were on the same page and understood the unique complexities of FASD.

- FASD often affects things like cause and effect, boundaries, social skills etc. and as the child grows these things can lead to the need for professional intervention. Knowing your child's behavior is due to FASD and not willful defiance or disobedience, doesn't make the pain any less... and you feel alone because your child's disability presents as behavior problem's leading people assume it is poor parenting, and sometimes deep inside you wonder if they are right!

People with FASD have good days when they can follow directions and are successful at completing tasks. They also have days when their brain simply isn't able to connect the necessary dots. This isn't their fault, it is FASD. This means your brain is constantly evaulating your child's ability, or lack thereof, to perform any given task. No one see's how this wears on the mind and body of a caregiver. It is difficult to explain so you quietly go about meeting your child's needs while silently yearning for someone to understand.

FASD and executive functioning issue's often go hand in hand. Executive functioning include's planning ahead, strategizing, working memory, and controlling impulses among a host of other things. People with FASD often need someone to be their external brain. Human's were created to be in charge of one brain, their own. Being the external brain for one or more additional people has a way of depleting one's reserve's....and you feel overwhelmed and so alone. How do you explain that your brain is tired?

So know you are not alone. There is a whole group of people out there who understand the unique challenge's you face while meeting the needs of the person in your care, be it a child or adult. We understand that the seemingly crazy things you do for your child are because he need's external supports to complete an activity that most people wouldn't give a second thought about completing.

We know that there are times you hide in the bathroom and turn the water on full blast so no one will hear your sobs when your child has just screamed that he hates you and he wishes you would die.

We know the feeling of turmoil in your heart when you hear those words. You know he doesn't really mean it, but it hurts nonetheless. 

We know that attending those weekly and monthly appointments just to keep services in place are draining, that sometimes you wonder if it is worth it all.

We know the how hard it is to put supports in place, to do more than you feel physically able because you want your child to succeed, only to have him back out at the last minute because his inability to understand his world brought on intense anxiety.

We know that hearing the knock on the door and seeing CPS, brings untold terror to your heart because you know your child will tell anyone whatever he thinks they want to hear.

We also know the fear that your child will unknowingly harm himself or others, or that he will take his own life. It is a fear many of us live with daily because we know how truly complex FASD really is.

We have also have days when we say, "I can't go on. I.AM.DONE!" Days when the thought of one more rage, one more meltdown, one more interaction with a thoughtless individual is enough to send you into the depths of despair.

We know the panic you feel at the thought of having to continue doing this for years to come...and you are already burned out.

We know the guilt your feel when you lose your temper, when you yell at your child. 

We know, we understand, you are not alone!

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Monday, May 7, 2018

Boundaries - A Difficult But Necessary Part of FASD

Many people with FASD can be successful with well defined boundaries. For our 10 year old son, these boundaries look like this:


- Play with one toy at a time, as too many toys require to much brain power. 

- Play with only one other person. He processes things at a slower pace so keeping up with a group of people taxes his brain and he melts down.

- Stay in line of vision. He has a poor sense of boundaries and does not think how his actions may affect those around him, leading to a break down in relationships. 

- Limited talking. Interacting with people, including talking, requires a lot of brain power, which is a limited commodity. When he over draws, melt downs ensue. Melt downs zap his brain and lower his cognitive functioning markedly, creating a vicious cycle we avoid whenever possible.

If we consistently implement these four boundaries, things go well and Joseph is successful. Sounds simple, right?And it is until I begin to feel badly for him. I feel guilty that he has to live such a restricted lifestyle. It hurts when I have to say no to a request because I know he will not be able to participate without melting down. His limited ability to apply cause and effect means explaining why we don't allow him to do certain things does little to make him feel better. To him it looks like we are being mean. He often says, "You are just being mean, you don't want me to have any fun!!!" He cannot understand that if we allow him to, "do what he wants," his day to day life would have to be even more restricted. 

I often explain it this way; He has a cup of brain power to use each day, he can use the whole cup at once by doing something big and spend the remainder of the day in tears, or we can let him have small freedoms all through the day. There is no excess, nothing like storing up brain power for an extra fun day. To make it even worse, if we seriously deplete the brain power one day, it may take weeks to build back up to one cup daily, meaning his days have to be even more restricted to eliminate melt downs. This is why we are so strict with him, but as a child who lives in the here and now, he cannot understand why we have to ration his daily cup of brain power. 

His inability to understand why he has a different set of boundaries than his siblings causes him no end of angst. If his little sister can ride her bike up and down the drive, why can't he? After all he is 10 while she is only 6! If his sister who is also 10 can drive the four wheeler, why can't he? It isn't fair and he is sure we are, "Just being mean and making his life hard." We have tried letting him do things even though we know it won't turn out well, with the hope that he will realize that we truly have his best interest in mind, but his inability to understand cause and effect quickly eliminated that mode of teaching.

I know in my heart that he NEEDS these boundaries and it will make him happier in the long run if we consistently enforce them. But in the moment it is so much harder to be consistently firm, especially when I know it makes him feel as though we don't love him. I cannot imagine how frustrated he must feel and I try to keep that in mind when he is crying yet again that, "You are just being mean to me!!"

When he was small, I used to look forward to the day when he would be old enough to have more freedom. I thought that we would be able let up on some of our rigid boundaries as he grows, but I am finding that it works the opposite way. The gap between him and his peers/siblings is continually growing wider, meaning we have to be even more vigilant in providing the supports and boundaries he needs to keep him safe. We now realize he will most likely always need a certain amount of supervision and structure to succeed in life due to the damage he suffered before he was born. If I am honest, this looks like a huge task. I feel totally inadequate to provide this level of care indefinitely but remind myself that, With God all things are possible!


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Thursday, May 3, 2018

It Is Okay If You Are Not Enough - Trauma Parenting

A friend gave me a card with the following written on it:

But in the dark, I hear God whisper,
Did you hug them?
Did you feed them?
Did you clothe them?
Did you love them as hard as you could?
  
   Then you've done enough. Leave the rest to me. And then rest in the fact that though you will never be enough, I am.

Let me fill your gaps. Loosen your grip. make room for me. Yes, do what you can. But don't kill yourself trying to do what only I can.

You are not enough.
And that is okay.
You weren't meant to be.

- jordanharrell.com

I have the card hanging on my bulletin board where I can read it often because in my humanness, I so quickly forget and try to carry the load myself.

We read about trauma and frantically search out the right therapy, the right diet, the right medication, then beat ourselves up when our child falls apart despite our best efforts. No one likes feeling like a failure, especially when the stakes are so high. Especially when your child's future is hanging in the balance. That is when I take comfort in the words, "You are not enough. And that is okay. You weren't meant to be."

You wanted this child, you fought the "system," you begged, and pleaded with God for this child. Then one wonderful day he was legally yours, even though in your heart you considered him your child long before the courts signed the necessary paperwork. How you rejoiced! You had an adoption party, family and friends congratulated your on your wonderful, selfless act. You reveled in the praise, feeling you had the world by it's shoulders. You adopted a child who had no home AND you now have another son/daughter. A win-win situation for all involved. Until it wasn't. Until your child began to pour out the hurt and pain he had bottled up inside, the pain that was just waiting for a safe place to unload. You weren't ready, you weren't prepared. The people who once stood by you, no longer praise you, instead they talk behind your back and report you to CPS. You are crushed and broken. You search desperately for the love you once felt for your child and feel intense guilt for the bitter feelings that are hidden in the recesses of your heart. You cry out a wordless prayer and hear God reply, "Did you hug them? Did you feed them? Did you clothe them? Did you love them as hard as you could? Then you've done enough. Leave the rest to me. And then rest in the fact that though you will never be enough, I am." And those words bring a peace that passes understanding into your troubled heart.

When you can no longer keep your child safe in your home and you seek out another placement for him....

When you find things in your child's possession that make your stomach churn.....

When the child whom you spent hours rocking as he sobbed and raged, turns on you and attacks you physically and verbally.....

When CPS comes knocking on your door because your child made false allegations yet again.....

When your child tells you he needs to talk to you and reveals things his sibling did - and it was on your watch! When you were the adult in charge of keeping everyone safe.....

May you hear Jesus gently whisper:
"Let me fill your gaps. Loosen your grip. make room for me. Yes, do what you can. But don't kill yourself trying to do what only I can."

Because sooner or later in life, we all come to the place where we realize we are not enough. When God has called you to care for the used, abused and neglected little one's of this world, you may find yourself face to face with this truth multiple times a day. When you are responsible for the life of a child and you continually face situations that are beyond your human ability to change or correct, remember God knows we are human. But never forget that HE IS GOD!

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Wednesday, April 25, 2018

12 Things Trauma Parents Have In Common

#1. Silence makes you uneasy. You don't think, "Oh good, she is finally happy so I will take a few minutes to read my book," instead you think, "Uh oh, what is she doing now," all the while running through scenario's from self harming to destroying property, or worse.

#2.  You find joy in simple things like your child eating breakfast with a smile on his face. A flower that your child offered as a peace offering after his latest rage. A cheerful, "Yes mom," in response to a command rather than the meltdown for which you were braced. A commendable report from a Sunday School teacher after you hesitantly sent your child to class against your better judgement.

#3.  Reading books and scholarly article's on trauma stimulate your brain, and you can discuss trauma on a professional level from years of therapy and psychiatric appointments.

#4.  Sharing your war stories with fellow trauma parents is refreshing, and challenges you to count your blessings.... or sink into despair because you realize your situation really is as bad as you thought and not a figment of your imagination.

#5.  You know if your child is stable by the pitch of his voice, the way he holds his body, and/or his choice of words and actions.

#6. When you have a family vacation with a minimum of meltdowns and your traumatized child says, "That was fun!" You gain new hope that maybe your child is beginning to heal.

#7. You analyze. When your child has a good day you analyze everything from what you did the day before to what he has eaten in the past week, hoping to find a common denominator so you can repeat the success. When he has had a hard day you do the same thing, hoping to prevent another fall out.

#8. You go into each new psychologist/psychiatrists office ready to go to battle for your child, even though you don't have much hope that this doctor will be any different than the last dozen. You know most of them won't be able to help you, but you keep trying with the hope that maybe this time you will find someone who has the knowledge and desire to help you search for, and access the tools that your child needs to heal.

#9. Screaming doesn't phase you. You know that sometimes your child just needs to scream out his pain and frustration, trying to intervene only complicates things. 

#10. You know how to have smiling eyes. When your child kicks you and yells hateful things, then comes in the door 5 minutes later with a dandelion he picked, "Just for you, mom!" You swallow hard, put on your smiling eyes and accept the gift for what it was meant to be - a peace offering. Later behind closed doors you cry gut wrenching sobs, wash your face, then prepare for the next round.

#11.  Triggers are common knowledge. You and your husband wordlessly divide and conquer when your child faces a trigger. Be it emergency lights, smells, sounds, textures or certain people. When you come in contact with any one of these, one takes care of the traumatized child, the other takes the remaining children. You both unconsciously scan surroundings, people, and situations to locate, and if possible, remove things that you know will trigger your child's trauma. Sometimes you simply remove the child while hoping and praying he comes through unscathed.

#12. Crying with your child is considered progress. One child asked me, "_________ didn't even hurt you, so why are you crying?" When I told her that I hurt when she hurts, she burst into sobs and allowed me to hold her close. When your previously antagonistic child allows you to comfort him, you have one of the most rewarding experiences of trauma parenting.

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